Table 4 Symptom control and communication as reported by bereaved relatives within the Regional CODE™ surveya
Hospice (n = 82) | Hospital (n = 218) | Community (n = 54) | All organisations (n = 354) | |
|---|---|---|---|---|
In your opinion, during the last two days, did s/he appear to be in pain? | ||||
Yes, all of the time | 6 (7.6) | 26 (12.1) | 5 (9.4) | 37 (10.7) |
Yes, some of the time | 37 (46.8) | 81 (37.9) | 25 (47.2) | 143 (41.3) |
No, s/he did not appear to be in pain | 36 (45.6) | 107 (50.0) | 23 (43.3) | 166 (48.0) |
Missing | 3 | 4 | 1 | 8 |
In your view, did the doctors and nurses do enough to help relieve the pain? b | ||||
Yes, all of the time | 64 (84.2) | 116 (64.1) | 34 (73.9) | 214 (70.6) |
Yes, some of the time | 11 (14.5) | 50 (27.6) | 11 (23.9) | 72 (23.7) |
No, not at all | 1 (1.3) | 15 (8.2) | 1 (2.2) | 17 (5.6) |
Missing | 3 | 3 | 1 | 7 |
N/A, s/he was not in pain | 3 (3.8) | 34 (15.8) | 7 (13.2) | 44 (12.7) |
In your opinion, during the last two days, did s/he appear to be restless? | ||||
Yes, all of the time | 6 (7.5) | 38 (17.8) | 7 (13.5) | 51 (14.7) |
Yes, some of the time | 41 (51.2) | 103 (48.1) | 30 (57.7) | 174 (50.3) |
No, s/he did not appear to be restless | 33 (41.3) | 73 (34.1) | 15 (28.8) | 121 (35.0) |
Missing | 2 | 4 | 2 | 8 |
In your view, did the doctors and nurses do enough to help relieve the restlessness? b | ||||
Yes, all of the time | 39 (71.0) | 73 (44.5) | 27 (64.2) | 139 (53.3) |
Yes, some of the time | 16 (29.0) | 66 (40.2) | 14 (33.3) | 96 (36.8) |
No, not at all | 0 (0.0) | 25 (15.2) | 1 (2.4) | 26 (10.0) |
Missing | 3 | 5 | 1 | 9 |
N/A, s/he was not restless | 24 (30.4) | 49 (23.0) | 11 (20.8) | 84 (24.3) |
In your opinion, during the last two days, did s/he appear to have a ‘noisy rattle’ to his/her breathing? | ||||
Yes, all of the time | 14 (18.7) | 37 (17.5) | 6 (11.1) | 57 (16.8) |
Yes, some of the time | 36 (48.0) | 66 (31.3) | 26 (49.1) | 128 (37.8) |
No, s/he did not have a ‘noisy rattle’ to his / her breathing | 25 (33.3) | 108 (51.2) | 21 (39.6) | 154 (45.4) |
Missing | 7 | 7 | 1 | 15 |
In your view, did the doctors and nurses do enough to help relieve the ‘noisy rattle’ to his/her breathing? b | ||||
Yes, all of the time | 32 (64.0) | 42 (38.5) | 16 (53.3) | 90 (47.6) |
Yes, some of the time | 15 (30.0) | 47 (43.1) | 9 (30.0) | 71 (37.6) |
No, not at all | 3 (6.0) | 20 (18.3) | 5 (16.7) | 28 (14.8) |
Missing | 8 | 10 | 4 | 22 |
N/A, there was no ‘noisy rattle’ to his / her breathing | 24 (32.4) | 99 (47.6) | 20 (40.0) | 143 (43.1) |
The nurses had time to listen and discuss his/her condition with me. | ||||
Strongly agree | 50 (63.3) | 68 (31.9) | 30 (58.5) | 148 (43.1) |
Agree | 26 (32.9) | 78 (36.6) | 16 (31.4) | 120 (35.0) |
Neither agree nor disagree | 1 (1.3) | 24 (11.3) | 3 (5.9) | 28 (8.2) |
Disagree | 2 (2.5) | 27 (12.7) | 2 (3.9) | 31 (9.0) |
Strongly disagree | 0 (0.0) | 16 (7.5) | 0 (0.0) | 16 (4.7) |
Missing | 3 | 5 | 3 | 11 |
The doctors had time to listen and discuss his/her condition with me. | ||||
Strongly agree | 55 (69.6) | 63 (30.0) | 31 (62.0) | 149 (44.0) |
Agree | 24 (30.4) | 87 (41.1) | 14 (28.0) | 125 (36.9) |
Neither agree nor disagree | 0 (0.0) | 23 (11.0) | 3 (6.0) | 26 (7.7) |
Disagree | 0 (0.0) | 21 (10.0) | 1 (2.0) | 22 (6.5) |
Strongly disagree | 0 (0.0) | 16 (7.6) | 1 (2.0) | 17 (5.0) |
Missing | 3 | 8 | 4 | 15 |
Did any of the healthcare team discuss with you whether giving fluids through a ‘drip’ would be appropriate in the last two days of life? | ||||
Yes | 23 (29.1) | 77 (36.7) | 10 (18.9) | 110 (32.2) |
No | 41 (51.9) | 107 (50.0) | 38 (71.7) | 186 (54.4) |
Don’t know | 15 (19.0) | 26 (12.4) | 5 (9.4) | 46 (13.5) |
Missing | 3 | 8 | 1 | 12 |
Would a discussion about the appropriateness of giving fluids through a ‘drip’ in the last two days of life have been helpful? 4 | ||||
Yes | 27 (47.4) | 83 (57.2) | 14 (32.6) | 124 (50.6) |
No | 30 (52.6) | 62 (42.8) | 29 (67.4) | 121 (49.4) |
Missing | 6 | 19 | 1 | 26 |
N/A, we had these types of discussions | 19 (25.0) | 54 (27.1) | 10 (18.9) | 83 (25.3) |
Did a member of the healthcare team talk to you about what to expect when s/he was dying (e.g. symptoms that may arise)? | ||||
Yes | 47 (58.8) | 100 (47.2) | 29 (55.8) | 176 (51.2) |
No | 33 (41.2) | 112 (52.8) | 23 (44.2) | 168 (48.8) |
Missing | 2 | 6 | 2 | 10 |
Would a discussion about what to expect when s/he was dying have been helpful? b | ||||
Yes | 29 (72.5) | 92 (77.3) | 23 (82.1) | 144 (77.0) |
No | 11 (27.5) | 27 (22.7) | 5 (17.9) | 43 (23.0) |
Missing | 8 | 17 | 1 | 26 |
N/A, we had these types of discussions | 34 (45.9) | 82 (40.8) | 25 (47.2) | 141 (43.0) |